Friends, family, dancing, cheering, school and sports are just a few of the things that Gentrie loves. At 14, Gentrie is hoping to excel at school so that she can be a nurse or a physician’s assistant and help other children with their individual battles.
In December of 2009, Gentrie began to notice that she was having trouble keeping almost any food down. She is lactose intolerant and is familiar with stomach pains, watching her food intake and when the temptation for pizza or ice cream would overtake her selfcontrol, she would often time throw up. It was because of this that we were slow to notice Gentrie’s worsening symptoms. By mid December we had decided that she simply was not paying attention to her need to avoid lactose and so we began to micro manage her diet. After doing this for a week and seeing no improvement we sought direction from her GI pediatrician Dr. Janet Harnsberger.
On our intial visit, Dr. Harnsberger was very reassuring and felt that Gentrie had acquired bacteria over growth which is a common companion to severe lactose intolerance. A simple antibiotic would reverse this and quite possibly we would have to watch for this throughout her life and again offer a quick round of antibiotics for balance. After a week of the treatment and seeing her condition continue to decline, we scheduled an upper GI where the doctor could go in with a scope and see what was happening as well as take some biopsies to confirm any suspicions.
The upper GI brought good news. It was agreed that Gentrie had a yeast infection on her aduedeum. Once again, a very simple solution. A specific drug taken for a period of time would quickly reverse this and allow her to eat normal without vomiting.
After three days of the treatment, Gentrie ended up in emergency with severe stomach pain, dehydration and persistant vomiting that had become violent. Gentrie could not even tolerate water without immediate throwing up.
More x-rays, ultrasounds, cleansings, blood work, etc and the emergency team were unable to determine the cause. They encouraged us to consult with our GI doctor and form a strategy for her care.
Gentrie is 5’7” and weighed 112lbs. before this condition began. A little lean and highly active Gentrie loves life and enjoys being a friend to everyone. She is happiest when she is busy and has recently gained a love of reading. By mid February, Gentrie had lost 20lbs. and was in and out of the hospital for malnourishment and dehydration. After a CAT scan and almost every other conceivable test, Dr. Harnsberger began to think that Gentrie’s had a rare condition known as pediatric gastroparesis which means a paralyzed stomach. This is a debilitating neuromuscular disorder of gastric motility in which there is delayed gastric emptying in the absence of any structural or mechanical obstruction. Consequently, it affects the way the body processes food.
Gentrie has been unable to eat or drink since January 2010. She also has been unable to regain the weight she has lost which leaves her extremely weak. Because of this and the constant nausea and vomiting, she is unable to attend school.
In February the doctors placed a NJ tube to allow us to give Gentrie the nutrition that her body was missing. After six weeks of the NJ tube, it was determined that surgically placing a GJ tube would be better for Gentrie and allow her a more normal life. (The NJ tube was obvious as it entered through her nose.)
Two weeks after the surgery, Gentrie began to choke and her GJ tube had gone from her intestines and made its way to her throat. After a long night in two different emergency rooms where doctors claimed they had never seen this before, she under went emergency surgery where they removed the GJ tube and replaced it with another one.
We are now on tube number six (not counting several temporary tubes). Because of complications, Gentrie’s body is not tolerating the GJ tubes.
Gentrie is TPN dependant, which means that 100% of her nutrition comes through a PIC line. The TPN is very hard on your liver and is not a good longterm solution.
Recently, we were referred to one of the nation’s premier motility disorder clinics at Nationwide Children’s Hospital in Columbus, Ohio.
Dr. DiLorenzo and Dr. Punati are experts with gastroparesis and where in our clinics in Salt Lake, the doctors may see a couple mild cases in their entire careers, these doctors see the most extreme cases from all over the world every day.
We were fortunate enough to spend a week at their clinic and have the benefits of their very technical tests and observations. They concurred with the diagnosis of gastroparesis along with noting some abnormal function of her muscles in her digestive system which they thought would benefit from a new surgical procedure with botox.
We were excited to try and had hopes for improvement. Following the surgery, Gentrie did not see any improvement in her ability to eat and process food. It was a discouraging time and Gentrie was at the end of her coping. The next step is an experimental procedure where Gentrie will take part in a study.
Enterra Therapy is the recommendation. This is a gastric pacemaker that is currently approved for use in adults with this diagnosis but not for children. Because of this, most insurance will deny any benefits. Our insurance received our request on Friday, June 13, 2010. We are hoping to hear back from them by this Wednesday.
The early results from the pediatric gastric pacemaker study is showing good results and provides hope. It is not a cure but a therapy. Gentrie is extremely hopeful that this will provide help for her. Dr. Stephen Tiechs at Nationwide Hospital will place the device and has had wonderful success.
This will require a three to four week stay in Ohio with other follow up trips to have the device checked and monitored. You can follow Gentrie’s progress at her Blog.
Many thanks to our wonderful friends and family for their prayers, love and support. We could not get through this alone.